The following is a conversation between Dr. Terry Fulmer, President of the John A Hartford Foundation, and Denver Frederick, Host of The Business of Giving on AM 970 The Answer in New York City.
Denver: The number of Americans over 65 years of age has jumped from 35 million at the turn of the century to 50 million today. And in about 20 years, there will be more people over 65 than under 18 in America. Make no mistake about it. America is getting older, and one institution that is dedicated to improving the care of older adults is the John A. Hartford Foundation. And it’s a pleasure to have with us tonight their president, Dr. Terry Fulmer. Good evening, Terry, and welcome to The Business of Giving.
Terry: Thank you so much. I’m thrilled to be here and to talk with you about our foundation.
Denver: Let’s talk a little bit about your foundation and its history. You were founded back in 1929, the year the stock market crashed. Share with us some of the history.
Terry: It’s a wonderful history. John and George Hartford made their money from the Great Atlantic and Pacific Tea Company – A&P grocery stores. They were early leaders in that organization. And at one point, they had 15,000 stores in this country. And they figured out early on how to reduce the price of food. That actually brought a Sherman Antitrust Act against them. Today, of course, we think about Walmart by comparison. Having said that, these were two visionary, very brilliant men who also were very committed to the well-being of the country, and they started their foundation in 1929.
Their mission was to do the greatest good for the most people. Early on in the foundation, the work was related to things like pacemakers, renal dialysis, biomedical research. And then the NIH was founded. Medicare and Medicaid came into play. And they adjusted and began to do more policy work, a little more work related to the way in which we use technology, and even then, there was technology. Then in the early ‘80s shifted to aging. Since that time, we’ve focused solely on improving care for older adults.
The greatest success story of the 20th century is longevity. We put all our energy, time, and talent into figuring out how to extend our life– longevity, and in fact what happened is, the outcome of that is there a lot of older people.
Denver: You have helped build the workforce in Geriatric Medicine. Before we get into some of the programs that you help support, let’s talk about aging in broad terms. We are in a society that’s somewhat obsessed with remaining youthful. But as a result of that, there has been this negative lens that we view aging through. What are some of the problems that are caused by this mindset?
Terry: There are several. I would start by saying the greatest success story of the 20th century is longevity. We put all our energy, time, and talent into figuring out how to extend our life– longevity, and in fact, what happened is, the outcome of that is there a lot of older people. Why are we surprised? This is hilarious to me. We’ve known this as the boomers started aging. The first thing is that, we’ve intentionally worked hard to improve the length of time that people would live, and we’ve succeeded.
Now, what we have to do is to build on the quality of life for older people. How did we get in this mindset? That’s a great question. Some would blame it on the boomers and say that we started early with Clairol and making sure that our hair never turned grey, staying physically fit, and seeing you can do it…really making it almost a personal mission to say: If you begin to look as if you’re aging, you’re failing. A multibillion-dollar industry around creams, etc. – maybe trillion. I don’t know. My friends in Dermatology tell me it’s a waste of our money, but we buy them. I buy them. I think that we have to do some really substantial thinking about this and also think about how to take advantage of this social construct called aging which we’ve created instead of thinking about function and capacity.
Denver: You have teamed up with the FrameWork Institute and others to re-frame aging. How are you going to go about doing that?
Terry: We’re very lucky to work with the FrameWorks people. Nat and his team are remarkable. The whole premise is that we need to think about the positivity of longevity and aging. So they’ve done a very nice job thinking about simple things like: what do older people like to be called? They do not like to be called seniors. They do not like to be referred to as a silver tsunami or a crisis. They are not a crisis. They are a fact of life and an important fabric of our society.
FrameWorks has done a remarkable job helping us think about how to turn that tide. Now, those of us in academics and healthcare and literature are following that, but the basic person on the street is not. I think that we’ll know things are changing when we see it more in the media. I think we do see some positive things in the media when you see anchors who are older women, for example, which wouldn’t have happened. This is an important…Judy Woodruff, for example. What a pioneer! And just a stalwart in the industry!
Denver: They also are thinking about aging as a process of gaining momentum. Would that be correct?
Terry: Yes it is. That gaining momentum and thinking about how with aging comes wisdom, maturity, reflection, and a capacity to really be a valuable player in whatever sphere you happen to be engaged in. Think about the fact that the Veterans Administration anticipates that they will have half of their nurses of retirement age in the next 10 years. That’s a serious issue. Unless you say: Well, why are they retiring? Who should we retain? How should we think about this differently? Because there’s this artificial construct called 65 that is creating an unnecessary crisis. That’s what we have to reframe.
When we take it from our own lens, we do tend to compare ourselves with others and benchmark against those people who are older than we are. As a nurse, I think about it in terms of function and quality of life and how one feels.
Denver: Let me ask you this. Does anybody ever think of themselves as old? For instance, when I was younger, I would look at a certain age and I’d say, That’s old. Or I might say, That’s really, really old! But once you get there, it doesn’t seem old at all. As a matter of fact, people 15 years older than you– now, that seems old. Am I alone, or are most people like that?
Terry: When we take it from our own lens, we do tend to compare ourselves with others and benchmark against those people who are older than we are. As a nurse, I think about it in terms of function and quality of life and how one feels. People who have diabetes, arthritis, a number chronic diseases that slow them down and don’t feel well, they feel older. Now, if you happen to be one of the people who has – and some people call it – aged successfully – then you’re going to be more robust and not think of yourself in that same frame.
Denver: Let’s turn to some of their major focus areas, and I know you’re very excited at the progress that has been made in creating age-friendly health systems. You have a very simple framework that you can explain this. That’s the four M’s of age-friendly health systems. What are those four M’s, Terry?
Terry: Thank you for asking. We are passionate about this project. Our 4 M’s are: Number one, What Matters to the person, Medication, Mentation, Mobility. They can be in any order except the first one has to come first. What Matters, Mentation, Medication, Mobility. When one thinks about growing older, what are some of the things that are so prevalent? Falling, medication side-effects, thinking about depression. If you get that 4-M bundle right, you get the next exponential number correct as well because you’re thinking about the way to take care of an older adult.
Certainly you start with what matters to you and that you’ll hear people say: “ I really want to get to my granddaughter’s wedding,” or “I’ve got one last trip to the Alps that I really want to make sure happens.” So, what matters is very important. For example, if someone said to you, “I know I need to have my hip replaced, but I can’t do that now because…” – an astute clinical care team will listen to that instead of pushing and saying: “You really need this surgery.” That’s what we’re talking about.
But if I zoom my lens out with you for a moment, let’s think about the age-friendly health system paradigm. Where did that come from? John Beard and Alex Kalache of the World Health Organization in 2008 started talking about age-friendly cities, age-friendly communities. As I thought about my presidency at the foundation and what I wanted to lead with, I wanted to think about that framework and the health system as a continuum. So, age-friendly health systems. Why? Because we do not have any. They don’t exist currently. But we’re working on it with our 4 M’s. I want to really give a shout out to IHI, Institute for Healthcare Improvement in Boston, Massachusetts where Derek Feeley is president, Kedar Mate is our PI. They are relentless about improving quality, and we’ve got them snagged on aging.
Denver: A second area is family caregiving. There are some 18 million people in the US who are doing this on a regular basis. And many of them are providing dementia care at home. That’s a number that’s only going to grow. What is the Foundation doing to address this issue and help lift some of the burden off these family caretakers?
Terry: As you’re indicating, we have three areas of emphasis: Age-friendly health systems, support for family caregivers, and improving serious-illness/end-of-life care. Those three are intimately interwoven every single day. Think about family caregivers as you pointed out, about 18 million. The AARP would say there are 40 million. Our study that the foundation helped fund at the Institute of Medicine said 18 million. But these family caregivers have a second shift, a third shift in their life. So, they might go to their work; they come home, and they have a frail, older person in their life who needs care. As you pointed out, about 8 million people have dementia. That is exhausting and debilitating. What are the supports we need to put in place to make sure that those family caregivers can do their work successfully and not be put in a position where they are doomed to fail?
Elder mistreatment is the outcome of abuse, neglect, exploitation, abandonment. Of those four categories, neglect is by far the most prevalent. That can be unintentional.
Denver: What are some of those supports?
Terry: Some of the supports include the following. Respite care, and that means making sure that the older person has a place where they could go while the caregiver took a nap or did the grocery shopping alone, for example. Additionally, we think about ways in which the older person gets instruction around common problems they might encounter so that they can anticipate it and have the support around them. What am I talking about? When you’re taking care of a person with dementia, one of the things that might happen is they might have difficulty going to the bathroom by themselves. This can be shocking to people. So, how do we tell them in advance that this could happen? And what are some of the ways that you could create a better environment in anticipation? Those are very concrete examples.
We need to be paying close attention to avoid elder abuse and neglect. In our experience, about 4% of older adults are known to be victims of elder mistreatment. Elder mistreatment is the outcome of abuse, neglect, exploitation, abandonment. Of those four categories, neglect is by far the most prevalent. That can be unintentional. All the same, you might have a person who comes in severely dehydrated or with a pressure wound on their skin. That’s from that process. Helping a family caregiver, giving them support they need, so that a person doesn’t get into a state of neglect is essential.
Denver: I think a lot of elder mistreatment in this country is just not reported to authorities. We kind of look at it as a private issue, the way we once looked at domestic violence. But that certainly is not the case.
Terry: You’re exactly right. And that’s why our foundation made a grant to EDC, Education Development Center, in Newton, Massachusetts where they have convened the nation’s top researchers and clinicians in the field of elder mistreatment to form a co-laboratory, so that low-resource institutions can have the same quality of screening and referral as the places that have a lot of resources like a Mount Sinai or a Cornell or a Mass General. So, we want to make sure that every emergency room in the country has the requisite knowledge and skills and support to make sure that they can screen and refer.
Robotics. Japan is way ahead of us in thinking about the way that we need to use robots to perhaps be the eyes and ears for us when it comes to helping older people. We also know that they’re making some progress in technology around the type of robotics that can move a person safely– the exoskeletons that are going on…
Denver: Great. Let me ask you about elder orphans. I think about 23% of boomers will eventually be without family caregivers. How do you plan for that?
Terry: This is a natural experiment occurring, and what we know is that we can anticipate it, but it’s not clear what that scenario will look like. Here’s an example of what it could look like. Robotics. Japan is way ahead of us in thinking about the way that we need to use robots to perhaps be the eyes and ears for us when it comes to helping older people. We also know that they’re making some progress in technology around the type of robotics that can move a person safely–the exoskeletons that are going on, and I’m very impressed by my friend, Joe Coughlin, at the MIT AgeLab, who has thought a lot about this, and he just wrote a book called, The Longevity Economy. And I’ll give a shameless plug for that book because it’s wonderful. And it really talks about how age is a social construct, and how we need to be thinking about how technology will be assistive for us as we move into the boomer aging years.
Denver: You touched on your third focus area a moment ago, and that’s serious illness and end of life. And we didn’t have many discussions about that, even 10 years ago. What are some of the things that people are talking about in that regard today?
Terry: That’s a great question. I think the best way to describe it in the way that it has surfaced so dramatically really is through the lens again of baby boomers. All of a sudden, they have seen what their parents have gone through, and they don’t want it. They don’t want it for their parents, and they don’t want it for themselves. Suffering at the end of life is something that no one wants. But if you are not sure, and you get sucked into our healthcare system with a 911 call, you will have tubes, drips, and drains. You will likely end up in an intensive care unit if you have heart failure, if you have terrible pulmonary problems, and it begins to spiral. That’s very challenging and very difficult.
So what we’re trying to do now is start the conversation – as Ellen Goodman says The Conversation Project – early, at your dinner table saying, “When I’m there, these are the things that I would want you to do. These are the things I would not want you to do.” Some people equate this to death panels. And we heard that in the news. This is exactly not that. It is about pre-planning what you anticipate you will want at the end of life during serious illness. This is not hospice. This is serious illness.
If you have cancer, and you might; it’s a chronic disease now. And you may live many years with that. And there will be times when you have peaks and valleys in your health. And so how do you want to move through that care is what we’re trying to get people to talk about. The Center for Advancement of Palliative Care at Mount Sinai led by Dr. Diane Meier does a great job in helping people think about palliation, which is how we address symptoms, and we manage systems and keep people at the highest quality of life they can have, even in light of terminal illness.
Denver: I even noted recently in both the case of Barbara Bush and John McCain, the news reported that they do not want any more care and have stopped it. Maybe that’s happened before, but I don’t remember hearing that on the news the way I have in the last couple of months.
There are about 4 million older people who have trouble getting to a doctor’s office or a clinic. So home-based primary care certainly would be a very nice thing to have, if available. How available is it currently?
Terry: Well, it’s not available enough, and so you’re making a great point. There are programs that have been quite promising. HomeDocs for example and also Hospital At Home. Bruce Leff and Al Siu, both prominent geriatricians in this country, demonstrating that you can have care that is just as successful, the outcomes just as positive, and yet have cost savings in light of what matters to the older person – staying at home. What matters is they want to stay home. I’ve never heard a person say – let me put it this way, once in a million, I hear a person say, “Please, I’d really like to go to a long-term care facility.” That isn’t what we talk about, even though those long-term care facilities can be quite remarkable in their quality and in what they can offer for some older people. But Hospital At Home, HomeDocs is coming back. And that really takes us back to the 1940s, 1950s.
Again, another book that I think is so instructive is by David Rothman, and it’s called Strangers at the Bedside. Those strangers are accountants and lawyers and how the one-to-one conversation between a nurse and patient, or a physician and a patient have become… we’ve lost the privacy around that narrative. So, I think that fast forward, your important point is that people want to stay at home and we need to get that care there.
I think that what happened over the last 10 years is that we convinced everybody that pain was the fifth vital sign. That was what we were talking about in clinical care… that no one should suffer. No one should have pain. So we were very liberal in our use of opioids. Now, we need to follow through and see who’s addicted, who needs help, who needs to make sure that they are no longer on these medications. The notion of de-prescribing is one that’s very popular right now, and I think it’s important.
Denver: Let me ask you about a scourge to our nation, and that is the opioid crisis. There’s been a lot of news coverage of it lately. But generally speaking, it seems to be focused on the relatively young people in their 20s or 30s, maybe even their 40s. How significant is this epidemic among older Americans, those 65 and above, for instance?
Terry: Thank you for asking that. We’re just beginning to understand the true depth and crisis of the opioid experience in older adults. Older adults see multiple specialists. They might get some Percodan from one physician for one type of pain or a nurse practitioner or a physician assistant. And then they may end up with multiple opioids from a number of different specialists, and people aren’t really aware of or cross-checking all the different interactions. By that time, the person’s addicted.
Now, the other side of the coin is that older people will sometimes say, “I don’t want to be addicted. Don’t give me that medication.” So they may suffer needlessly. I think that what happened over the last 10 years is that we convinced everybody that pain was the fifth vital sign. That was what we were talking about in clinical care… that no one should suffer. No one should have pain. So we were very liberal in our use of opioids. Now, we need to follow through and see who’s addicted, who needs help, who needs to make sure that they are no longer on these medications. The notion of de-prescribing is one that’s very popular right now, and I think it’s important.
Denver: It’s a good thing. No question about it. Let’s take a look at your organization, Terry, itself, and what makes the corporate culture of John A. Hartford Foundation unique and distinctive; and is there any one thing you do to help shape and influence that culture?
Terry: That’s a great question. What’s special about our corporate culture is that everybody comes to work every day with the same passion; that is improving care for older adults. It transcends to our CFO, our tech people. They listen. They participate in our conversations because everybody’s affected. Everybody has an older relative, friend, family member. So, it’s personal. I’d say that makes us special. It’s very, very personal every day. We’re not diffuse. We focus on better care for older adults. So there’s no question. If you come into our office, our walls are covered with pictures of wonderful older people. One of the pictures – you’ll get a kick out of this – I put up was a picture of Henry Kissinger. Henry Kissinger is in his 90s. He looks great. Here’s the comedy. When young people come in the office, I’ll say, “Who’s that?” and they’ll say, “I don’t know.” I think that makes us all humble. We live it. We think about it. We have our mission painted on the wall. I borrowed that from IHI where they do that. Every day you walk in you say, “That’s why we’re here. We’re going to improve care for older adults, and I love it.”
This is not a zero-sum game. And what we don’t want is intergenerational warfare where: if you get this, I don’t get that. I think we have to look at this holistically. It’s in the best interest of our country that everybody stays healthy.
Denver: Let me close with this. There’s often discussion and debate on whether more of society’s limited resources should be directed to the elderly or to the very young. And that debate is made even more complex because of the predominant racial and ethnic makeup of each population. How do you think about this? How do you think this nation needs to think about this?
Terry: This is not a zero-sum game. And what we don’t want is intergenerational warfare where: if you get this, I don’t get that. I think we have to look at this holistically. It’s in the best interest of our country that everybody stays healthy. So, prevention, the Robert Wood Johnson Foundation is doing a very nice job thinking about a culture of health and that this is not us versus them. This is all-in for the well-being of our nation, and I will say that at our foundation, we hope that we can engage dozens more foundations in the work of better care for older people. There are not that many foundations that really focus on aging, but I do believe that’s changing because everybody’s looking in the mirror. That’s really important. We’re very impressed with the way in which we can partner with others to get this to where we want it– which is better care, better lives for older people.
Denver: Dr. Terry Fulmer, the president of the John A. Hartford Foundation, I want to thank you so much for being here this evening. Your website is johnahartford.org. What information there will visitors find to be useful?
Terry: I think they’ll find our priority areas. They’ll find links to wonderful, instructional materials. They’ll see videos that help them think about what we think about. And if they don’t find that, they should call me. We welcome their call.
Denver: I bet you do. Thanks, Terry. It was a real pleasure to have you on the show.
Terry: Thank you so much for giving us the opportunity today.
Denver: I’ll be back with more of The Business of Giving right after this.
The Business of Giving can be heard every Sunday evening between 6:00 p.m. and 7:00 p.m. Eastern on AM 970 The Answer in New York and on iHeartRadio. You can follow us @bizofgive on Twitter, @bizofgive on Instagram and at www.facebook.com/businessofgiving.